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Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I

18 Years
Not Enrolling
Neurofibromatosis Type 1, Von Recklinghausen Disease, NF1

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Trial Information

Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I

This study aims to understand predictors of adaptation and quality of life among adults
affected with neurofibromatosis type 1 (NF1) and autosomal dominant neurocutaneous
condition. NF1 carries a significant psychosocial burden for affected individuals. Aspects
of NF1 that are especially challenging include the unpredictable nature of the disease,
variability in severity of symptoms and medical complications, uncertainty in progression,
and vulnerability to stigmatization due to the highly visible and often cosmetically
disfiguring features of the condition. The literature suggests that because of these and
other challenges posed by NF1, affected individuals may struggle to adapt to their condition
and, consequently, experience poor quality of life. In this study, Lazarus and Folkman's
Transactional Model of Stress and Coping is used as a framework to conceptualize adaptation
and quality of life to NF1. A cross-sectional design with quantitative methodology will be
employed to investigate the relationships of appraisals and stigma as predictors of
adaptation and quality of life. Adults affected with NF1 will be recruited via regional and
national NF organizations and websites, as well as through ongoing NIH clinical research
protocols for NF1. Eligible participants will be invited to complete a web-based,
self-administered survey.

Inclusion Criteria


Adult men and women at least 18 years of age who self-report as having NF1.

Participants must be able to read and write in English.

Individuals of all ethnic, religious, socioeconomic, and educational backgrounds and from
a variety of geographic locations in the United States will be included.


Children under the age of 18.

Inability to read and write in English.

Type of Study:


Study Design:

Time Perspective: Prospective

Principal Investigator

Barbara B Biesecker

Investigator Role:

Principal Investigator

Investigator Affiliation:

National Human Genome Research Institute (NHGRI)


United States: Federal Government

Study ID:




Start Date:

May 2008

Completion Date:

Related Keywords:

  • Neurofibromatosis Type 1
  • Von Recklinghausen Disease
  • NF1
  • Neurofibromatosis Type 1
  • Quality of Life
  • Adaptation
  • Stress and Coping Model
  • NF1
  • Survey
  • Neurofibromatoses
  • Neurofibromatosis 1
  • Osteitis Fibrosa Cystica



National Human Genome Research Institute (NHGRI), 9000 Rockville Pike Bethesda, Maryland  20892